There’s a certain amount of adrenaline that has been accompanying us on this journey: Brain surgery! Complications! Recovery! Expectations of seizures!
That adrenaline is gone now. We are weary.
Anyone who has walked through a prolonged trial can tell you that it’s not the crisis moments that are the most difficult. It’s the daily routine that comes after the crisis, the continued low level awareness of living with pain. Sometimes the routine itself becomes heartbreaking…it seems like nothing has changed, yet everything has changed. Other times the crisis causes a change in routine, and part of the challenge is simply not knowing if the change is permanent. Our life, which has been turned upside down due to these seizures, now feels like it’s permanently on hold.
It is difficult to still be here after 10 days without Ben having seizures, especially when he hasn’t gone 10 days without a seizure for the past 3 months. He is beginning to have some small “auras,” and we can only pray that these will develop into bigger events.
In the meantime, we’re trying to keep our spirits up with music and comedies. We’ve been listening to all kinds of music, including the Matchbox 20 song “Unwell,” which really describes Ben’s life in this season:
All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something
Feeling like I’m heading for a breakdown
And I don’t know why
But I’m not crazy, I’m just a little unwell
I know, right now you can’t tell
But stay awhile and maybe then you’ll see
A different side of me
I’m not crazy, I’m just a little impaired
I know, right now you don’t care
But soon enough you’re gonna think of me
And how I used to be…me